Having an invisible illness, chronic, terminal or otherwise, puts a person in a different position. A visible illness offers up no need to explain things. If you are in a wheel chair and the activity people want to do requires you to go up a series of stairs (no elevator because really that’s just not in the plans) there is no need to explain why you won’t be partaking.
Have arthritis, decaying bones, horrible pain and people don’t see the condition. As a matter of fact you just may end up accused of being lazy for not climbing those stairs. And don’t mention the world “can’t” because people won’t believe it. Instead they will guilt you, humiliate you or cajole you into doing what your body will struggle with.
Oh you have sudden exhaustion that makes loving seem like you are swimming upstream in a mudslide? Well start to exercise, or eat better food, or stop drinking or get rest. No one understand that kind of exhaustion except a fellow sufferer.
have wave upon wave of nausea attacking you? Don’t be surprised if people pass it off as a hangover, you being dramatic or some such deal.
Oh the least is endless and with lupus I have managed to experience far more than I’ve wanted to. I have yet to figure out how to explain it to be in a way that they understand. I cannot keep track of how many people have told me to rest a bit more and I’d feel just fine. And if I had a penny for every time someone asked me why in don’t just take a pill to get better, I wouldn’t have to drag a rebelling body to the office.
We understand that cancer can’t always be cured. Why can’t people under the same for other illnesses? Lupus is not sexy and since it is as individual as each person who has it, there isn’t a “one face” for the illness. It isn’t as well-known as it should be even though there are countless people who suffer from it.
When I was told to get a handicapped parking pass I balked, because I was sure I wouldn’t need it. Pride really bolstered me up when frankly it took just about all I had to walk from the far end of the parking lot to e door of a store. So when I finally used one, I received countless looks of disgust and such. Why? I’m sure people thought I was some type of jerk or worse. I can walk, sort of, and I don’t use a cane etc so of course a lot of people will assume I just want easy parking.
Try explaining to a boss why you need to be able to work at home sometimes can create a division between you and a “healthy” worker. Again if you can’t see anything wrong with a person then surely that person must be lazy etc.
Most people with invisible illnesses tend to expend a great deal of precious energy just trying to be normal, just trying to fit in with the healthy people. The problem with this, is it helps foster a strange relationship with invisible illnesses and those who refuse to pretend to be fine. Not only that, but it diminishes the struggles people have wi basic every day things. And finally it makes it near impossible for some people to understand what this kind of life is like.
I don’t pretty up my illness, it is just that an illness. I didn’t ask for it, I’m not really a fan of it, but we have an understanding: I refuse to allow lupus to define my life and lupus refuses to be evicted from my body, but tries to behave somewhat. I accept this deal because it’s better than having the illness always raging within me and destroying me.